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Friday, November 28, 2014

Low Functioning? High Functioning? What Are We Really Saying?

This guest post is written by Mary Louise Betram. Ms. Betram is an educator has specialized in Angelman Syndrome other learners with Complex Communication Needs (CNN). She presents and consults internationally on Angelman Syndrome, learners with complex communication needs and literacy.

labels aren't for people

I hate the
terms/labels "low functioning" and "high functioning" because they don't
tell me anything
about the WHOLE child, and I'm ALL about looking at
the child as a whole person. "Complex Communication Needs" (CCN) tells me a
lot about the child I am about to meet, "Cerebral Palsy" gives me an
idea about any movement or motor planning difficulties and I can keep
this in the back of my mind during my dynamic assessment. "Autism Spectrum Disorder" (ASD) gives me
clues though I still have no idea or judgments about the particular
child I am about to encounter. "Angelman syndrome" (AS) tells me a lot,
though I know the "Google version" is very different to the reality.

"Low functioning" tells me nothing and gives me no clues EXCEPT to tell
me about the adults who work with the child. When I read or am
told that this child is "low functioning" it tells me right away that
the adults in this child's life have not done enough problem solving to
discover what supports the child needs in order for him or her to be
successful. Calling a child "low functioning" is, to me, actually an
adult saying "He's too tricky, we have no idea what he needs and when he
needs it".

Children who are labeled 'high functioning' are the
kids who are relatively easily to problem solve. These are the kids that
make it more obvious what supports they need in order to be successful.

Child with ASD and CCN who demonstrates he can
navigate an iPad like an Apple Genius? Relatively simple AAC assessment
resulting in dedicated device being prescribed.

Verbal child with
CP who attends mainstream school and is academically at grade level but
has anxiety and stress during transitions? Ask child what is stressful
and see what they say, develop a plan preparing for transitions, a
consistent language to guide child through transitions, and enable child
to have an element of control during transitions.

Kids who are
called "high functioning" are the ones who are the easier ones to
problem solve. "High functioning" has nothing to do with them, it's all
about us and how we see them and their needs. Every single one
of us has the potential to be "low functioning" if we do not have the
supports we need in order to be successful. If you need strong glasses
for reading and you forget them on the day you need to drive to a client
in the Woop Woop (Boondocks) and you can't read the road directory (map) you are going to be
pretty low functioning and have to ask for a lot of help.

If you
always do the weekly supermarket shopping with a list and you leave the
list at home one week, the week when relatives are visiting and some
have random allergies and you can't remember what they are, you are
going to appear quite low functioning as you slowly walk around the store,
stopping to rack your memory about what you need, and you will probably
make a lot of mistakes and come home with the wrong things.

We all need supports in order to be successful.

If the criteria for being a "high functioning" husband was related to
his fine motor abilities when packing the dishwasher and folding the
washing, and brushing the kids' hair and making even ponytails, then
many husbands I know would be labeled low functioning. That label
wouldn't tell me about that husband's incredible cooking capabilities,
or his ability to create whimsical bedtime stories for his kids. The
label doesn't tell me about that husband as a whole person.

I
can cook a mean scrambled eggs on toast. I am a "High Functioning"
Domestic Goddess when I have had a proper sleep and no travel. Ask me to
make scrambled eggs when I get home to Perth (Australia) from Los Angeles (USA) and it is
a different story. I will most likely drop an egg, there will be
eggshell in the scramble, and I will probably be unable to string a
coherent sentence together and I will most probably be crying from my jet-lag. Anyone walking in could label me low functioning. I would also
appear extremely low functioning if I was asked to cook 400 servings of
scrambled eggs in the Sheraton Kitchen on a busy Sunday with 25 chefs
running around doing their jobs and all looking incredible high
functioning.

I am very high functioning in terms of language,
comprehension, and I can navigate myself around many cities very well.
However, if you dropped me into the center of Baghdad I would present as
low functioning. I would be terrified, unable to understand the
language or communicate in a language people around me would readily
understand, and I would be unaware of the expectations and of the
consequences of my actions, even small actions such as how I walked or
how I approached someone. I would be overwhelmed by sensory input -
sights, smells, sounds. I would be a mess.

If, however, you dropped
me in the center of Baghdad with a SAS Regiment (Air Force Regiment)
that had briefed me
beforehand, gave me access to language I could use and understand,
explained to me exactly what I would see, what I was to do, and how I
was to do it then I could appear quite high functioning. If I had the
supports I needed to enable me to be successful, even in just making it
from the helicopter drop point to the base, I could be seen by observers
to be quite high functioning. It is ALL about the supports.

Many of our students who are labeled "low functioning" are struggling to
survive in their own
Baghdad. Without a military briefing, without a map,
without understanding the purpose for being there, unable to understand
or process the language and with no way of asking for help. How cruel of
us to do that to children.

Children who are labeled "low
functioning" are the kids who are the tricky ones to problem solve. They
don't, "throw you any bones". They are often consistently inconsistent
and the supports that work one day just don't work the next. These are the
kids that need the strongest supports from aided language stimulation,
a robust full language AAC systems, alternative pencils, visual supports,
sensory strategies, and an engaging curriculum. If we just say, "well,
he's low functioning, so that's why he can't do xyz" then it is OUR fault
he cannot do xyz. What do the adults need to do in order for the child
to at least have access to be successful at even trying to do xyz?

We have a duty to these children to support the team to shift
the blame away from the child. I

brutally honest with many of the
teams I am called in to work with. If they say "Hannah is low
functioning" then I say, "When you use that term, you are blaming Hannah
for the things she cannot do. I guarantee that Hannah does the best she
can with what she has, and that the things she does - communications,
behaviours, movements etc - are for a reason. If Hannah has learned that
it is no longer worth trying to do things then that is our
fault
because the adults in her life have essentially told her to stop
bothering, to give up. Let's look at what Hannah needs to be able to do
and then let's think BIG about how we can support her to be successful
doing it." It is about US, not the children.

We are the adults and, frankly, we are paid to support these children to be successful. If a child labeled "Low Functioning" has Cortical Vision Impairment
(CVI) and nobody on his team has any idea about what that is then the
likelihood of that child being able to use his vision successfully, and
to improve his vision in that class, are slim to none, and people will
still see that child as 'low functioning'. When staff learn about CVI
and relate that information to their student suddenly they can see that
child as strategic in his movements and in his use of vision. Suddenly
that child appears quite "clever" and "high functioning". Suddenly the
child is able to see things. Suddenly that child is able to demonstrate
his knowledge. Did the child magically change overnight into a "high
functioning" person with cerebral palsy? Nope.

What did change was the
knowledge, expectations, and skills of the adults. The adult now understand and implement the best support for the child and "suddenly" the child could
engage with the lessons. It is not about the children. It is about us
and the supports we provide.

I am not expecting that any person
on the teams that I consult with become an expert in Angelman Syndrome,
Complex Communication Needs, Epilepsy, medications, CVI, apraxia,
dyspraxia, AAC, PODD, or Aided Language Input. I AM expecting the team
to have an understanding of how these things apply to their student and
how they can use this knowledge to enable their student to be
successful. I AM expecting the team to problem solve.

There are
many children who appear "high functioning" in some environments and "low functioning"

in others. Rather than just saying, "Jack loves art
class so that's why he behaves and does his work properly" we need to
look at what is it about art class that supports Jack to be successful
there. What is it about art class that is missing in his other classes. How are classes where he cannot cope and where his challenging behaviours
and communication frustrations are most evident different from art? Often it is not simply
because, "Jack loves art". It can be the expectations of the teacher, the
way the teacher explains things, the visual supports and gestures she
naturally uses as she teaches. It may be where he sits in the art room,
the acoustics of the room, or the lighting. We owe it to the child to
critically analyze what is it about the art class that works for Jack
and how can we put those supports into other areas in his life so that
he can be successful there too?

I hope more and more
professionals stop using the terms "low functioning' and "high
functioning" and that more parents and professionals are empowered to
talk about the damage these labels can cause. At the beginning
of my presentations and workshops I talk about two of the adults with
Angelman that I work. Peter is in his early twenties, is not fully
toilet trained, lives with other men, has many challenging behaviours,
especially around food. Peter uses some AAC, sign, gesture, and loud
vocalisations. Peter loves trains and cake. Peter likes to destroy
computers, televisions, and other electronics. I then show some
photos of Peter. People look at Peter surrounded by food and broken
computers and they say 'Yup, he has Angelman'. People comment, "he's
probably deletion" (what is often considered to be the more severe form of Angelman) and "I've had low functioning students with Angelman like that at my
school".

Then I tell them about Bob. He also has Angelman and is 22. He attends community
college where

he is studying a certificate in Music. Bob plays the
drums, composes music using composition software on the Mac. Bob uses a
70 per page PODD book and the 60 cell PODD Pageset on the iPad Compass App. Bob
has a girlfriend who he loves dearly. He has always been included in
mainstream schools and lives with his mates that he has known since
childhood. Bob has his own business and presents to University Business
students about his business and his life. Bob attends literacy classes
to improve his literacy. People say "are you sure he has Angelman?"
and "He must be ube3a or ICD. Maybe he's Mosaic?" and "Wow, he's so high
functioning".

I then show some photos of Bob.

They are the same photos as Peter.

Bob and Peter are the same person.

How we talk about someone matters.

Originally published on AGOSCI listserve, November 2014Reprinted with permission and slight modifications.

17 comments:

Thank you so much for this post. I have realised that my son has a severe learning disability because he wouldn't have got into his lovely special school without one. But I really struggle with the concept of him being "low-functioning" because he just isn't, he functions very well in fact LOL. He is lively, curious, fun-loving, well-behaved, calm, happy, non-verbal but very communicative when he wants something!I can see WHY those people with autistic children who have average or above average cognitive abilities want a label to set them apart from the less academic children, it makes them feel they can praise their child for achieving something. But it tells you nothing about how happy their child is.

My family has several individuals along the autism spectrum, both diagnosed and undiagnosed. After Thanksgiving, my sister and I talked about the various challenges we are facing. My sister, who has training as a special education teacher, commented on my dad's and her own high IQ's, but followed up with the observation that IQ does not measure adaptability. For those of us who are trying to help someone find their path in life, we need other measures besides IQ- measures that include a person's ability to adapt- to help us form realistic expectations of what constitutes success for that individual. The thought comes to me that multiple tests might be developed to help us standardize levels of functionality- I am only acquainted with the IQ test at present, and I have long since considered all the facets of functionality that IQ fails to address.

In our district we are not allowed to use IQ tests. We are the second largest district in the country. Our Psychologists do use a battery of assessments, observations, and functional measures to evaluate our students. So the movement toward more functional based assessments are out there.

That's great Anonymous. IQ is one of the many ways that we falsely categorize people. Often times "High Functioning" is code for "verbal" and "has self care skills". And the last thing we need in this field is secret code. Let's be clear with language. If we mean verbal we should say verbal, etc.

Hello Anonymous, first of all this is written by a teach and a consultant, not a parent. So it is not parent blaming teachers for a lack of progress. It is, however, a call for accountability and action from two teachers (the author and the blog owner) to all the teachers out there who are all too willing to write off a child who they have decided is "low functioning". The writing in the post about blame is about moving from a "blame the child" or "blame the disability" model for lack to progress to a model where we, as professionals accept responsibility for lack progress and revise our methods instead of using a cop-out like "he is low functioning".

I am taking care of my 3yo son, a so called 'high-functioning' autistic, or pdd-nos.

But he feels more like a 'low-functioning' kid to me anytime.

I cannot finish telling how very draining it is to teach or begging to teach an autistic child on speaking. For after having repeated the same speech all the time, nothing seems to drill into his head. People say don't give up, my head keeps asking 'Why aren't you giving up?'

With a neurotypical like myself, I've never been dealt with patiently by mom. I truly am at wits ends and feel that it's better I let him be than to resort to methods used by mom.

Today has been another bad day. My son has been repeating 'soup' whenever it's time to brush his teeth. I lost it and demanded his meaning of 'soup' WHAT SOUP? WHERE'S THE SOUP? WHY ARE YOU TALKING ABOUT SOUP? WHAT KIND OF SOUP? WHY WOULD YOU TALK ABOUT SOUP NOW? WHAT SOUP?!?!?

I can't, I can't, I can't take it anymore. I can't standing talking to a wall, or having a child talking to me without eye contact, or listening to him rant what he only understands, or listen to him rant out all the nouns or verbs he knows but without using meaningfully. I can't go on pretending that I enjoy listening to him, I can't go on acting like it doesn't hurt to know he's not really talking out of a sound mind. I don't know how to act like I enjoy being around him though he scares me to hell, worries me like crazy and bores me to death! I don't know what to do with this little human who isn't acting human at times, sometimes I'm even thinking his soul is kidnapped somewhere, or maybe he's possessed! I can't help feeling sorry for him, myself, ourselves, and feed this resent toward all those doctors or therapists who can't lay a finger on where's wrong, and LET US BE! Somebody say something, shed some light and share the logiC!!

Then I came across this article. Maybe, I'm the low functioning one myself. A low functioning parent, low functioning adult, low functioning helper. So helpless, I do not know what to do with him. I wish I'm surrounded by high functioning professionals who tell or teach me what to do, so that I can help my child. This is no ordinary child ( who is, anyway? ), he's one with special needs, needs that I am not aware of and trained at dealing with. I don't know, I can't... My mom can't even love me. I don't know how to help my child, I only know that love isn't enough anymore.

Hello, I am very worried about you and what you are writing here. There are many places to get help for you and your child. I can hear how upset and frustrated you are. Your child has value and you have value. All people, as you can attest to, want to be loved by there parents. Loving your child doesn't make it stop being hard but loving yourself can make it easier to love your child. Please keep reaching out until you find the right people to help you and your child. Please find a therapist willing to be with you on this journey and who can help you heal your childhood traumas. And please reach out to autism and disability support agencies to get help for your child.

I am an autistic adult... I give presentations and write quite a bit, and I do a similar thing. I describe someone who has a huge vocab (test ceiling on IQ tests), lives independently (only in the last six months at age 27 and with supports), and has an MFA degree. I then describe someone who needs assistance to cross the street, cannot shop in a store by herself, self-injures when in pain without being able to communicate the pain, and types to communicate in multiple situations. Hi, I'm Lydia :-) Both are me. People cannot reconcile one and the other, even though my life is a complex mix of all of those traits. I appear very "HF," at first glance, because I appear typical (even though I'm 27 next week and look 16)... and when people meet me in a calm, quiet environment and hit on a favorite topic with lots of memorized scripts, they are shocked to learn I am on the spectrum. And yet, when people meet me in chaos or a loud environment when I'm repeating myself and using idiosyncratic language that only my mom can parse through and hold my ears and walk away mid-conversation, they are shocked to hear I have my Master's and am able to drive (locally, with a lot of teaching!). When we label someone HF, we put blame on them for their struggles and deny their right to have challenges, and when we label them LF, we deny their very real strengths and talents. It's a massive fail, all around. I always suggest that people describe the person with a strength, a challenge, and an interest or preference... not much harder than HF/LF if you've met the person for more than ten minutes, and it gives SO MUCH more useful info without the loaded and misleading descriptors!

thank you so much for your comment Lydia. We are getting a lot of flack for this post and hearing from the people who live it that we, as professionals, have (at least this time) got it right means a lot to us. Best wishes.

My son was just diagnosed with autism spectrum. He will be in school next year. My wife and I feel like we are behind the eight ball with catching up to getting our son into the world of special needs services. How on Earth do we connect up with the school in order to enroll him in the special needs programs?http://www.specialneedsexpos.com/special-needs-resources-come-to-your-town/

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